Posted in Archive, September 2021

‘Learn to live with it’

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After over a year of my follow up gyny appointment being rearranged and cancelled repeadedly by the hospital due to Covid, I finally saw the consultant. I arrived with high hopes, a notebook full of the requested data they’d asked me to log, and a very grumpy daughter who would have preferred we’d stayed on the bus.

After reassuring staff that I’d contracted Covid at the start of the month and hadn’t escaped isolation, they took my temp which was border line high. Feeling thankful that a quick round of begging and reassuring them that I felt fine, I was allowed to stay. Two hours later, I was seen with grumpy toddler who was vocalising her unhappiness in tow.

Normally when I have a female gyny the appointment goes slightly better. I explained that my periods were getting worse 48 days long on average but 73 was getting more frequent. That they left me physically sick and due to the change in hormones increased my eds symptoms. She brushed it to one side.

“You will have to learn to live with it”. I’m pretty my face was a picture. My emotions were not in check as I was desperate for this appointment to go well, having last time discussed albation with me. Meds are no option for me due to my EDS, I understand that, hell we had even tried that. I queried the more radical surgical and was told not untill I’m forty, at the moment I am 28.

I can’t get my head around it really. I’m lucky to get more than two weeks between each cycle. It leaves me in pain, sick and exhausted. But yeah sure “learn to live with it”.

Posted in Archive, August 2021

Pacing; Using A Wig

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Moments ago I quickly signed off a Facebook live as my partner walked through the front door, home from his evening gym session. Normally during my lives I’m very good at opening up and sharing my concerns but tonight I struggled. They are superficial to say the least.

Yet as Damon sat down I burst into tears. This seems to have become an evening routine. I’m physically struggling at the moment so I’m cutting corners where I can to save energy and reduce pain. This is starting to really bother me. Things like washing my hair is something I do as little as possible as it’s painful, energy drainage, and often leads to a flare in pots, eds and dystonic symptoms. Yet I don’t want to look unclean. The solution I have in mind I’m not to sure of. I don’t know whether to go for a drastic buzz cut and wig wearing while it grows back; the difference being I would follow the no poo method which would result in less physical stress on my body, or just to try to wig wear on days when I’m struggling.

Trying a wig for the first time to explore the idea

I’m still exploring my options. I’m not reaching for the razor on the back of feeling emotional no matter how tempting it may seem. The plan currently is to reach out to hairdresser’s first for advice on the above idea but also on the issue of hair loss which I currently have in certain patches which gets me down. I’d love to hear from anyone whose done similar.

Posted in Archive, August 2021

Freedom; Are The Disabled Included?

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We recently were fortunate enough to spend a chunk of time down south visiting my mum. It was a lovely break away from routine, and the kids were over the moon to get to have a ‘extra long sleepover’ with their Granny. If it weren’t for the newly added hand sanitizers that appeared on every corner one could almost forget about the pandemic for a moment.

On our way home we chose to pull in at a service station to let the kids stretch their legs after hitting the que of another incident. The kids dad took them off to the toilets whilst I popped into the shop. I only needed a couple of items, and instantly looked for a basket as one hand is strapped up at the moment due to scaphoid fracture. There were none.

It may sound dramatic to say that I started to feel anxious at this point but it’s true. I can’t hold things in my fractured hand and my other is occupied with my trusty walking stick. In the end I resorted to cradling the items in the crook of my elbow. I dropped them repeatedly. The staff noticed from behind the counter and did nothing other than stare. Other customers, who were incredibly kind, helped me gather up my shopping as I shuffled about, hunted for a basket and confirmed that due to Covid they’d been taken away.

Eventually, feeling really rather embarrassed at my inability to hold a couple of items, I approached the staff at the tills. When I queried the lack of baskets, I was met with a shrug and a murmured grumble about Covid. I asked about how they expected their disabled customers to cope, after all they had watched me struggle and drop my items several times. In reply he simply offered to scan my shopping and bag it for me, let me pay, then he would watch it so I was free to carry on shopping. It was crystal clear that they had not faced with this situation so far.

Numerous charities and research groups have been saying this through out the pandemic; the disabled community are being left behind. Article after article has stated how disabled people have reported feeling overlooked, forgotten, isolated, ignored. Just today there was a piece on how two York Councillors were not allowed to vote on accessible parking in their area as by being disabled they had a prejudice – madness!

Freedom day has come and gone, yet now things have reopened I’ve found that actually I’m running into more restrictions that affect my disability than prepandemic – for example in the same service station they wouldn’t open up the disabled toilets as they didn’t have a designated staff member free to monitor them. They had a member of staff a few feet away though in the ladies directing women into cubicles.

While it may sound like I’m riled up about not very much it’s not something im going to let slide. I don’t by any means think that the staff in the shop should have magically have transfigured a chocolate bar into a basket but they could have offered a bag for me to go around with or to have walked alongside me and helped. Either way I would have been and out in less than half the time if if id just had a little bit of aid. Which is something I’ll put in my letter when I write to them later this week.

Posted in Archive, July 2021

Injection Day and referral thoughts

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Waiting to see my neurologist

Today was botox day up in London with my lovely neurologist. He’s happy that the medication we started on a few months back is keeping me far more stable, which is amazing, so we are keeping that in my treatment plan. I’m currently on a medium dose so we have room to play with should we need to come winter when I typically go down hill due to the cold.

I’ve finally gotten the date for my video fleursoscopy which is the middle of next week. I’m a little nervous but it will be good to shed some light on what’s been going on internally and if there is anything specific that we can do/change to tackle it. This is to tackle the chronic aspiration.

Then it’s on to blood tests. Whilst I don’t mind these particularly, my veins are world class players at hide and seek. No matter how much I drink before hand they like to hide or better yet collapse. I often leave blood tests looking somewhat like a pin cushion. These are being done just to double check there’s nothing being missed and causing any issues whilst we wait for Gyny to see me. They were meant to see me almost a year ago. However they keep rearranging and cancelling my appointments, which my lovely GP is chasing. In the meantime I’m left with regular pain flares that leave me doubled up in pain.

I’m hoping now that more people are vaccinated that appointments/refferals may start going back to normal. Specially orthotics is one appointment I’m looking forward to, my knees and wrists need new splints. It’s not an urgent appointment in anyway but it would make day to day life a bit easier and reduce pain a little more.

In the meantime I’m ticking along. I’m looking forward to the schools breaking up and making the most of the summer holidays before my eldest starts primary school full time.

This made me laugh a lot. Credit to Theraspecs
Posted in may 2021

Ambulant Wheelchair Users

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For those who don’t know me personally when they see me coming along me in power chair they naturally presume that I’m wheelchair bound. It’s always an interesting situation when they see me move my legs so I’m more comfortable, or stand up to get in to the house. Sometimes I need the chair full time due to injury or severity of spasms, other times I need it due to length of time we’re out for and my body cannot handle it.

Whilst I’m confident in using it and appreciate how much freedom it provides. I’m not quiet used to the interactions yet with people with nothing nice to say. There’s been a few occasions of people telling me if I lost weight I wouldn’t need the chair, or to stop being lazy and walk. Presumptuous really considering they have no clue why I’m in it but also hurtful. I’ve always been a sensitive soul and I need to learn to toughen up.

I’m currently using my chair full time due to yet another injury thanks to my EDS. I find it odd how many people still are surprised by ambulant chair users. It’s an area that deffinently needs more discussion and awareness. I’ve used wheelchairs on and off for years due to my many conditions, as my EDS has deteriorated the use has increased. It enables me to still function and go about my day to day life independently, something that is very important to me. I couldn’t be more greatful for my chair.

Using my power chair to get home from church.

Posted in may 2021

Looking forward

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Recently I’ve been on a bit of a rollercoaster of emotions. Hence why I didn’t automatically return to blogging following my son’s operation in March. I wasn’t sure where my head was at and needed to work through it. A handful of events had triggered it and I was up and down more than the seesaw at the park.

I’d had an assessment where I need to provide extreme detail of all my conditions right from the start to now. You can imagine how emotionally exhausting that can be, explaining to someone why you had to give up your dream midwifery degree, relieving the rapid decline in health over the years and what I do to cope. I hadn’t anticipated it to affect me so strongly but it did.

It’s taken awhile but my head’s back where it’s stronger. I think during these covid times where we don’t have our usual coping mechanisms it’s quite easy to feel sucked under. Previously I could have rung up my friends and been at the soft play laughing over a fruit shoot, while the kids ran themselves to sleep. Spirits lifted, dark cloud averted.

Im looking forward now, and focusing on the future. On the post lockdown adventures with my family, with having friends in for a brew and a natter. But also accepting that lockdown has taught me that I don’t need to be on the go and out every day. If my body’s saying no then PJ’s, Disney and baking is it. That’s perfect too.

What are you looking forward to?

Posted in Archive, covid-19, february 2021

Covid-19 Vaccine with Chronic Conditions

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Covid-19 Vaccines have been rolling out for several weeks now. I am fortunate enough to have had my first vaccine, Pfizer, administered last Saturday. The uptake the vaccines for Covid-19 has been fantastic to see. However I am aware from the questions that have popped up on my facebook page, and private messages that there some concerns out there on how safe these injections are for people with chronic health conditions. A worry I completely understand. I have a history of anaphylaxis myself to certain foods, and a have had psychotic reaction to two different medications previously, it has left me very wary of trying any medication that I’ve not previously had. But I’d much rather trust in the figures that say its going to be ok, than risk catching Covid-19. I’ve put together information gathered from a few of the charities/societies that this represent the conditions this blog covers, in the hope that it will provide those of you who want some information with what you need, and reliable resources to turn to (all the sections are hyperlinked so you can link through to them).

Covid-19 Vaccines| Dystonia UK

Dystonia UK put the safety of the vaccinations to their three medical advisors, all three agreed that it was safe for Dystonia patients to receive (including those receiving botox injections). It was suggested that if you have not already heard from your dr/gp in regards to your vaccination appointment and your breathing is affected by your Dystonia then it may be worth chasing this up.

Covid-19 Vaccines| Ehlers-Danlos Society

For those with Ehlers-Danlos who are wanting to talk to their Dr I recommend going to the Ehlers-Danlos Society website where there is a link for advice for clinicians on the matter. The site currently states that they are note aware of any studies that have specifically examined EDS or HSD with covid-19 injections. However those who have chronic conditions that could be made worse if they were to develop covid (including potentially Long Covid) the benefits of protection from the vaccine outweighs the risks associated with the infection on vaccination side effects.

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Covid-19| PoTSUK

For those of you with PoTs/Autonomic Dysfunction/MCAS who are specifically interested in the vaccines ingrediants list then click here. This will take you to the PoTS UK page dedicated to information on Covid-19 vaccine info, where you can find a full ingrediants list for both the Pfizer and Oxford injection.

The recommendation that PoTS UK are giving so far is that for PoTs patients, if your condition is uncomplicated then it is not a contraindication for the vaccine. If you have MCAS and experience very severe allergies, you need to discuss whether you are suitable for the vaccine with your allergy specialist.

Further information can be found on the link given above.

Personal Experience

I had my Pfizer vaccine jab 7 days ago. I was invited to book after being deemed extremely clinically vulnerable throughout the pandemic. The set up was simple, our local rugby stadium has been converted into a vaccination centre. Volunteers split us up as people arrived, those who were there via the mass vaccination scheme to one room, those for the GPs vaccination, like myself, into another. After confirming who I was, and being given some literature to read through on the jab for afterwards, it was done. Personally found it less painful than the flu jab, and far less painful than botox injections! It was then off for a 15 min sit in a chair to ensure that there were no unwanted side effects before being allowed to leave.

Side effects wise they have not been to bad, my arm has been a bit achy and I felt very low energy for maybe 36 hours. Quite similar, but not as bad, as to how I react to the flu jab. The provided information leaflet, did warn that the second jab could provide slightly more side effects, however I’ll take a couple days side effects any day in exchange for proctection.

Overall nothing to be concerned about. Relatively quick, very easy, fairly painless.

Posted in Archive, January 2021

The Test Results Are In

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After spending the last several months in and out of hospital, losing the sight in my eye for an extended period of time and only partially regaining it, losing all sensation in my right leg and experiencing sensory issues in my arms I was once again told it looked like I had MS. Yet the examinations didn’t agree. I was left battling for help as different hospitals and departments seemed to find it impossible to communicate with each other. Well the most recent test results are in! We finally have an answer.

If I am honest I had almost given up on a diagnosis other than unknown complex neurology condition with global sensory loss. None of my Drs were communicating with each other, no one could agree with each other and that was resulting in me receiving no treatment. It has been a period of high stress and extreme emotion.

Today I finally had my Emergency Video Consultation  with the local specialist in Neurology; this was requested back in October. Firstly they are agreed it isn’t MS which is great confirmation. What they are sure of is that is another part of my Ehlers-Danlos Syndrome. Apprerently when I’m dislocating my knees the nerves around it are being over stretched and damaged hence the loss in sensation/function. The same thing had happened to my elbows causing the sensation I was getting in my lower arms and hands. This surprised me greatly; mainly as I had in fact asked the doctors this very question when I was on the ward last year and they laughed at me for suggesting it. In regards to my eyes the nerves are not communicating with my brain effectively, but are not damaged like you get in MS.

He’s suggested we get me booked in with my EDS consultant for some advice in the meantime on how to cope with these symptoms as they can last a significant amount of time.

So whilst the EDS is generally on a slippery slope currently and it’s all about managing it, keeping on top of my pain and being proactive, I feel that overall it was a very positive chat.

Posted in Archive, January 2021

Improving Routine To Improve Pain Levels

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Health conditions can have both a physical and emotional toll, for example chronic pain; this can impact your sleep, cause more fatigue and leaves you starting the day just as drained as when you went to bed. A routine can change all that.

Now I’m not suggesting you plan out every moment of your day!

However a well thought through routine can empower your day, lowering your pain levels over all as you’ve optimised the way you have used your body.

It’s worth asking yourself when is your pain worse in the day? What activities does that impact? Make a list. From here you can proactively look at your routine and adjust how you manage your day which in turn should lower your pain levels. An example of this is if you struggle more in the mornings, then lay out what you need (or ask someone to help you) in an accessible place. This will save you time and energy in the morning.

Make sure to include time for you in your routine and space out energy consuming tasks over the day. If there is a task you are particular struggling with think about how it can be altered. For example, when chopping vegetables does sitting on a stool help? Would buying pre-chopped vegetables be a more realistic option? Is there someone else who could do this task for you?

Doing to much will result in a Boom and Bust cycle. Pacing is your friend.

I’ll be live tomorrow night with more on the Boom Bust Cycle.

Posted in Archive, January 2021

Lockdown, Homeschooling and Work

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With the introduction of the new lockdown I had had been planning on getting crafty with the kids again. That idea was snuffed out after an email landed in my email box confirming that nursery would be doing live home lessons followed by tasks to be completed, photographed and emailed to his teachers. All well and good except my partner works shifts and I have an 18 month old whose favourite word is no, also takes no as a yes and will most deffinently try to touch every key on my laptop.

So today was the first home school lesson. After half an hour of technical wrestleling we finally got on to Teams and were met by a chorus of STEFAN. The children were happily mucking around with each other, my daughter was desperately trying to join in and the teacher? Her laptop had the same issues mine had to start with and never made it to the lesson. Round two tomorrow!

Dystonia and Me Holistic Health Coaching is officially up and running which has added a lovely touch to my evenings. I have been thoroughly enjoying chatting with different people with a range of issues and starting them on their journeys with me.

Colourful heart enlarging in further colours being touched by a human figure in blues and purples

I would love to hear if any has had the vaccine yet? From the calculator I predict mine to be late Feb to March at the current injection rates and would be interested to hear your experience in the comments. I personally will be accepting the offer of the jab, I just would like to go in to it eyes open to side effects.